This study explored the processes of significance about the risk communication in prenatal/preconception setting within 1 month to the end of genetic counselling intervention. Participants were all attending a programme of Cardiomyology and Medical Genetics in Naples, Italy, for the first time. Transcripts of 18 semi-structured interviews were analysed using interpretative phenomenological analysis. Themes arising included the following: the familiar outcomes of genetic counselling, the risk representation and the impacts on decision-making. The findings suggest the significance of the experience of genetic risk and the implications for the support of individuals and their family after the conclusion of the genetic counselling intervention.
Ad Hoc Committee on Genetic Counseling (1975) Genetic counseling. American Journal of Human Genetics27: 240–242.
2.
BatyBJ (2009) Risk communication and decision-making. In: LeRoyBSVeachPMBartelsDM(eds) Genetic Counseling Practice: Advanced Concepts and Skills. Hoboken NJ: Wiley-Blackwell, pp. 207–250.
3.
BieseckerBPetersK (2002) Genetic counseling: Ready for a new definition?Journal of Genetic Counseling11(6): 536–537.
4.
BraunVClarkeV (2006) Using thematic analysis in psychology. Qualitative Research in Psychology3(2): 77–101.
5.
BrockiMJWeardenAJ (2006) A critical evaluation of the use of interpretative phenomenological analysis in health psychology. Psychology & Health21(1): 87–108.
6.
BuckmasterAMGallagherP (2010) Experiences of and perspectives on genetic testing for breast/ovarian cancer in and outside of the customary clinical setting. Psychology & Health25(9): 1041–1059.
7.
ChapmanESmithJA (2002) Interpretative phenomenological analysis and the new genetics. Journal of Health Psychology7(2): 125–130.
8.
CharlesCGafniAWhelanT (1999) Decision-making in the physician-patient encounter: Revisiting the shared treatment decision-making model. Social Science & Medicine49(5): 651–661.Available at: http://dx.doi.org/10.1016/S0277-9536(99)00145-8
9.
ChristopheVVenninPCorbeilM. (2009) Social sharing of genetic information in the family: A study on hereditary breast and ovarian cancers. Journal of Health Psychology14: 855–860.
10.
D’Agincourt-Canning L (2001) Experiences of genetic risk: Disclosure and the gendering of responsibility. Bioethics15: 231–247.
11.
DalyMBBaservickAMillerSM. (2001) Communicating genetic test results to the family:A six-step, skills-building strategy. Family & Community Health24(3): 13–26.
12.
Delany DixonSKonheim-KalksteinYL (2010) Risk communication: A complex process. In: LeRoyBSVeachPMBartelsDM (eds) Genetic Counseling Practice: Advanced Concepts and Skills. Hoboken NJ: Wiley-Blackwell, pp. 65–94.
13.
DjurdjinovicL (2009) Psychosocial counseling. In: LeRoyBSVeachPMBartelsDM (eds) Genetic Counseling Practice: Advanced Concepts and Skills. Hoboken NJ: Wiley-Blackwell, pp. 133–175.
14.
DowningC (2005) Negotiating responsibility: Case studies of reproductive decision-making and prenatal genetic testing in families facing Huntington disease. Journal of Genetic Counseling12(3): 219–234.
15.
ElwynGGrayJClarkeA (2000) Shared decision making and non-directiveness in genetic counselling. Journal of Medical Genetics37(2): 135–138.
EmeryJ (2001) Is informed choice in genetic testing a different breed of informed decision-making? A discussion paper. Health Expectations4(2): 81–86.
18.
EtchegaryHMillerFDeLaatS. (2009) Decision-making about inherited cancer risk: Exploring dimensions of genetic responsibility. Journal of Genetic Counseling18(3): 252–264.
19.
FanosJHJohnsonJP (1995) Perception of carrier status by cystic fibrosis siblings. American Journal of Human Genetics57(2): 431–438.
20.
ForrestKSimpsonSAWilsonBJ. (2003) To tell or not to tell: Barriers and facilitators in family communication about genetic risk. Clinical Genetics64: 317–326.
21.
FosterCWatsonMMoynihanC. (2002) Genetic testing for breast and ovarian cancer predisposition: Cancer burden and responsibility. Journal of Health Psychology7(4): 469–484.
22.
GaffCLClarkeAJAtkinsonP. (2007) Process and outcome in communication of genetic information within families: A systematic review. European Journal of Human Genetics5(10): 999–1011.
23.
GargiuloMAngeardNHersonA. (2008) Impact psychologique de la maladie de Duchenne sur l’enfant et l’adolescence, ses parents, sa fratria. Onze années d’expérience d’une consultation pluridisciplinaire. Neuropsychiatrie de l’enfance et de l’adolescence56: 73–81.
24.
HallowellNRichardsMPM (1997) Understanding life’s lottery: An evaluation of studies of genetic risk awareness. Journal of Health Psychology2(1): 31–43.
25.
JacopiniGZinziPBengalaM. (2006) Esperienza di consulenza genetica e comunicazione diagnostica nelle patologie neuromuscolari [Experience of genetic counseling and diagnosis communication in neuromuscular diseases]. Psicologia Clinica dello Sviluppo10(3): 523–533.
26.
KesslerS (1979) Genetic Counseling: Psychological Dimensions. New York: Academic Press.
27.
KesslerS (1988) Invited essay on the psychological aspects of genetic counseling. V. Preselection: A family coping strategy in Huntington disease. American Journal of Medical Genetics31(3): 617–621.
28.
KesslerS (1997) Genetic counselling is directive? Look again. American Journal of Human Genetics61: 466–467.
29.
LaurentCCoupierIPujolP (2006) Mise en place de l’activité du psychologue clinicien au sein d’une unité d’oncogénétique [Setting up the activity of the psychologist clinician within an oncogenetics unit]. Revue Francophone de Psycho-Oncologie1: 57–62.
30.
LégerIDauchySChompretA (2006) Place du psycho-oncologue dans la démarche oncogénétique: accompagnement de la phase de réalisation du test génétique [The role of the psychologist in the oncogenetic approach: Psychological support in the realisation of oncogenetic tests]. Revue Francophone de Psycho-Oncologie1: 51–56.
31.
LermanCCroyleRTTercyakKP. (2002) Genetic testing: Psychological aspects and implications. Journal of Consulting and Clinical Psychology70(3): 784–797.
32.
LewisCSkirtonHJonesR (2012) Reproductive empowerment: The main motivator and outcome of carrier testing. Journal of Health Psychology17(4): 567–578.
33.
McAllisterM (2002) Predictive genetic testing and beyond: A theory of engagement. Journal of Health Psychology7(5): 491–508.
34.
McAllisterMPayneKMacLeodR. (2008) Patient empowerment in clinical genetics services. Journal of Health Psychology13(7): 895–905.
35.
MacleodRCraufurdDBoothK (2002) Patients’ perception of what makes genetic counselling effective: An interpretative phenomenological analysis. Journal of Health Psychology7(2): 145–156.
36.
MorrisonVHendersonBJTaylorC. (2010) The impact of information order on intentions to undergo predictive genetic testing: An experimental study. Journal of Health Psychology15(7): 1082–1092.
37.
MostacciuoloMLMiorinMPrandoniP. (1998) Genetic counseling and reproductive strategies of mothers with children affected of Duchenne muscular dystrophy. In: Saviolo-NegrinNCusinatoM (eds) Riproduzione a rischio [Reproduction at Risk]. Torino: Boringhieri, pp. 97–102.
38.
NusbaumRGrubsRELoseeJE. (2008) A qualitative description of receiving a diagnosis in the prenatal or postnatal period. Journal of Genetic Counseling17: 336–350.
39.
ParsonsEPClarkeAJ (1993) Genetic risk: Women’s understanding of carrier risks in Duchenne muscular dystrophy. Journal of Medical Genetics30: 562–566.
40.
PatenudeAFGuttmacherAECollinsFS (2002) Genetic testing and psychology: New roles, new responsibilities. The American Psychologist57(4): 271–282.
41.
RestaRBieseckerBBennettRL. (2006) A new definition of genetic counseling: National Society of Genetic Counselors’ Task Force report. Journal of Genetic Counseling15(2): 77–83.
42.
SeniorVSmithJAMichieS. (2002) Making sense of risk: An interpretative phenomenological analysis of vulnerability to heart disease. Journal of Health Psychology7(2): 157–168.
43.
SivellSElwynGGaffCL. (2008) How risk is perceived, constructed and interpreted by clients in clinical genetics and the effects on decision making: Systematic review. Journal of Genetic Counseling17: 30–63.
44.
SmithJA (2004) Reflecting on the development of interpretative phenomenological analysis and its contribution to qualitative research in psychology. Qualitative Research in Psychology1: 39–54.
SmithJAMichieSStephensonM. (2002) Risk perception and decision-making processes for genetic testing for Huntington’s disease: An interpretative phenomenological analysis. Journal of Health Psychology7: 131–144.
47.
UhlmannWRSchuetteJLYasharBM (eds) (2009) A Guide to Genetic Counseling. Hoboken NJ: Wiley-Blackwell.
48.
VeachPMBartelsDMLeRoyBS (2007) Coming full circle: A reciprocal-engagement model of genetic counseling practice. Journal of Genetic Counseling16: 713–718.
49.
ZaccaroA (2011) Genetic counselling: The significance of a choice. PhD Thesis, University of Naples, Italy.
50.
ZaccaroAFredaMF (2010) The post-genomic era: Transition to parenthood and genetic counseling. In: V congress of the European Society on Family Relations, Milan, Italy, 29September–2October, pp. 188–189.
51.
ZaccaroAFredaMF (2011) The genetic counseling: Toward a medical-psychological integrated model. Psicologia della Salute1: 11–31.
52.
ZaccaroAFredaMF (2012) Genetic counseling request and reproductive project. Psicologia della Salute3: 49–74.
53.
ZankoAFoxM (2010) Actively engaging with patients in decision making. In: LeRoyBSVeachPMBartelsDM (eds) Genetic Counseling Practice: Advanced Concepts and Skills. New Jersey: Wiley-Blackwell, pp. 31–64.
